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Possible Dairy Sensitivity? and general NICU update

Hey, Gang..
I guess it's past time for a little NICU update. Gonna do my best to keep it simple.

"Little Ricky" is being a little stubborn. He has been up and down on his oxy weans. He's been between high flow and reg cannula a few times over the past 2 weeks but he was put back on regular cannula 3 days ago and finally seems to be truly ready to wean off of the high flow. He is having reflux tendencies (common in my family, but being brought on by his NG tube) and that seems to throw him off his good numbers. He has had a few bottles and it completely all over the chart as to how much he takes; sometimes just a few mls and sometimes an entire 40. He's having the "strider" sounds more frequently, so the reflux is becoming more obvious. The nurse practitioner has told me they don't start treating reflux until closer to 38 weeks, for some reason I haven't asked yet due to so much going on in general.

In the meanwhile, I had pneumonia the week after he was born and was put on more antibiotics (I'd been on several after the pPROM before his birth) and the following week after getting over the pneumonia (and being told I could not go to the NICU) then I developed thrush as a result. I had to pump and dump for an entire week until my OB cleared me.

Finally kicked that nasty stuff a little over a week ago, and as of yesterday, I've now developed mastitis in my right breast even though I pump every 3 -4 hours, and I'm using a Medela Symphony. Sp I'm back on antibiotics again and praying I don't get thrush, again.

He is having blood in his stools. This started last week when he had been constipated for 2 days and then had to strain, so there ya go. They did xrays and labs then to rule out NEC or other signs of infection and all was ok. Then again a few days later. Xrays and labs again, all clear. So I asked the NP to remove the fortifiers from his breast milk because I felt like that was the culprit. Then Monday and yesterday, every stool has had scant blood. DH was there last night when this was going on. He's also losing a few ounces per night on his gain. So they are trying to determine what to do next so he gets back on the weight gain, but what could be causing this intestinal problem.

(I've also tried to get him to non-nutritive feed, which went very well the first time, but when it's been time to get him to nurse, he gets too tired after a minute of so and desats and Bradys on me; even tried it with a nipple shield :(    )

The last I heard from the NP last night is that they are wanting to take him off my milk and try him on Alimentum soy for 48 hours to see if that solves it. Then, if that does calm things down for him, they are suggesting that it is most likely a dairy sensitivity and that I should consider going on a dairy free diet if I wish to continue to breast feed.

I have a sitter coming in a couple of hours to stay with my older kids so I can spend several hours in the NICU today. I'm hopeful to get more answers and ask more questions to his caretakers. I'm also scheduled for a meeting this Friday with his case worker and other dept reps from the NICU to go over his case and what's anticipated forecast for his care through discharge and at home, as well.

Just curious for others' similar experiences with the stool issue and/or dairy sensitivity. I am trying to stay off Dr Google.

Thanks for reading this very long "short" update..

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Lilypie - (9CKY)Lilypie - (xzY1)





Re: Possible Dairy Sensitivity? and general NICU update

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    This sounds very similar to our journey. The blood started as soon as they tried going from the prolacta fortifier to regular HMF so they took her off, but the blood kept coming back. We never tried formula but it took them around two months to finally decide it was a dairy allergy because she also had some anal fissures so we weren't sure what was causing the blood.

    I wish I changed my diet earlier when we were in limbo but I resisted because I really hoped it wasn't a dairy allergy and she was gaining weight so well despite the occasional blood. But, it was pretty much confirmed when I removed dairy and the blood stopped. Once we took her home, I got a little lax and pretty much only avoided cheese and milk but still had butter, cream, etc. Blood would show up occasionally but go away again and she continued to gain weight well and her reflux went away (never needed medication). When she was 10 months (7 adj) we started seeing more blood and she had a few vomiting episodes. We took in a diaper that had no visible blood and it turned out to be full of microscopic blood! I felt awful but immediately cut out ALL milk and soy ingredients and after a month her diapers tested clean, whew!

    The diet was hard at first (especially over the holidays) but it's easier now that we are in a groove. This website is SO helpful for recipes: https://www.mspimama.com/p/recipe-index.html

    I really hope she grows out of it and we plan to test her when she is around 1 year adjusted. Let me know if you have any more questions!


      Our Angel Patricia born sleeping 3/30/12 at 31 weeks
    Our Fighter Anna born early 1/8/13 at 26 weeks
    Hoping to bring home #3 due 9/9/15
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    This sounds very similar to our journey. The blood started as soon as they tried going from the prolacta fortifier to regular HMF so they took her off, but the blood kept coming back. We never tried formula but it took them around two months to finally decide it was a dairy allergy because she also had some anal fissures so we weren't sure what was causing the blood.

    I wish I changed my diet earlier when we were in limbo but I resisted because I really hoped it wasn't a dairy allergy and she was gaining weight so well despite the occasional blood. But, it was pretty much confirmed when I removed dairy and the blood stopped. Once we took her home, I got a little lax and pretty much only avoided cheese and milk but still had butter, cream, etc. Blood would show up occasionally but go away again and she continued to gain weight well and her reflux went away (never needed medication). When she was 10 months (7 adj) we started seeing more blood and she had a few vomiting episodes. We took in a diaper that had no visible blood and it turned out to be full of microscopic blood! I felt awful but immediately cut out ALL milk and soy ingredients and after a month her diapers tested clean, whew!

    The diet was hard at first (especially over the holidays) but it's easier now that we are in a groove. This website is SO helpful for recipes: https://www.mspimama.com/p/recipe-index.html

    I really hope she grows out of it and we plan to test her when she is around 1 year adjusted. Let me know if you have any more questions!
    thanks so much for that link!!!
     the nurse practitioner just called me and confirmed they'd like me to try the dairy free diet. He hasn't had any stools since being on the alimentum for 24 hours. I'm going to give a good shot before I throw in the towel on breast feeding just yet.. This has been so much work to keep up my supply I'd hate to feel like it's for nothing. NP assured me that it could be something he will outgrow. I have a deep freeze that I can store previously pumped milk in for up to a year, so maybe this work isn't all for nothing. But mainly, I want this little dude to get better so he can gain back weight and start hitting milestones again,, and COME HOME!
    Thanks again, so much!


    Lilypie Kids Birthday tickers  image


    Lilypie - (9CKY)Lilypie - (xzY1)





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    Glad to help! We don't have a deep freezer so I ended up donating almost 1000 ounces of milk that she couldn't have. It was tough because I worked so hard for it but it was still worth the effort to build my supply because over a year later she is still EBF :-). 


      Our Angel Patricia born sleeping 3/30/12 at 31 weeks
    Our Fighter Anna born early 1/8/13 at 26 weeks
    Hoping to bring home #3 due 9/9/15
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    My son also has a milk protein allergy.. The bloody stool started the day after they began the fortifier. I tried to keep pumping and go dairy free but unfortunately my milk never really came in and we switched him to Alimentum. That was the best decision for us and he has really thrived since then. He is now ten months old and weighs 23 pounds!! The one thing I will say is Alimentum is very expensive ($27.50/can) so if your milk came in and you can handle the pumping I would recommend it. Good luck!
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